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Comment by Jen on February 7, 2015 at 1:15pm

Purplemainst,

I saw your message on my emails but I could not find it on this wall. I too am now losing hair not just on the hairline but everywhere on my head. Luckily my hair is very coily and so it is not that easy to notice. I use black eye shadow wherever the spots are noticeable.  I  cannot hide the hairline at all. I know that eventually I will need a wig. I too am trying to move on with my life.

Comment by Jen on February 2, 2015 at 12:49pm

Dragon Fox, I am so sorry about your nephew and your diagnosis. Losing someone so close and especially to suicide is very difficult.  No one knows what pressures people are under. I am still grieving the loss of my husband three years ago and found out last Friday that my baby sister has early onset of Alzheimer's. She is 50. I discovered my FFA 2 months after my husband died of cancer but I think it may have been there since the previous year but due to caregiving, I never had the time to look closely in the mirror. I remember glancing in the mirror while getting dressed before he passed and thinking that I look different but could not quite put my finger on the problem. The round spots started after he died, then I ran to the doctor. I have to try and make sure that I pace myself so my sister's situation does not cause me to have another big shed.

Comment by Lo on February 2, 2015 at 12:30pm

Dragon Fox:  First, I am sorry for your loss.  May your heart heal in time...

My diagnosis, too, came last Friday.  It was a huge blow... I knew in my head and heart that is what it was, but to hear the words - not easy.  I start my injections this Friday.  I just wish that I knew if the injections and Plaquenil really do make a difference in the rate of loss - or even halting it temporarily.  I feel like I read a lot of posts on here, and the treatments were to little avail.  Has anybody had good success with the shots/medicine?  I have been losing hair for 4.5 years now... and wish I'd started this process sooner... maybe it would have made a difference in the progress.  Who knows.  Mine started above my ears (well, my eyebrows went first, and leg hair)... and progressed a bit up towards my temples... now I know it is "active" again... and it is starting on my forehead.  I can still get away with my "own" hair... I wonder how many of us women out there are still able to do this... It would be nice to see that.  

Ellen:  I love that picture that you sent.  Great haircut... I'll bet yours looks fabulous.  

Lynn: Funny (or not) that you mention the itching.  My scalp isn't itchy (although it does burn), however my skin is very itchy.  I am on prednisone because it got so bad.  The derm says it is "winter itch" or eczema... but I get these tiny red bumps that sometimes cluster, other times are just singular - but my goodness to they pack a punch when it comes to itching.  I don't know if it is related... but it seems they are running parallel.  

Comment by Anne Louise on February 2, 2015 at 11:34am

Dragon & Fox I'm so sorry for your loss. I had a family member die by suicide years ago and the nature of the death made it doubly devastating...that helpless feeling that somehow you could have prevented it.

Regarding the injections, my dermatologist told me the Clobetasol spray is just as, if not more, effective than the injections. I was diagnosed a year ago and have been using Clobetasol nightly since diagnosis. It seems to help with the occasional redness but I fortunately have not had much itching or irritation with FFA. My hair loss has been extremely slow; my hair stylist continues to tell me she notices no changes, but I do see subtle ones. So perhaps you could ask about switching to steroid topical instead of steroid injections.

Recently there was a thread here about dry eye, which a lot of us suffer from. I wanted to share that I had read flaxseed can help with this so I decided to give it a try. I put 2 tablespoons milled flaxseed (looks like brown powder) in my oatmeal every morning for the past two weeks and I find I am using my wetting drops less frequently. It is a simple change to my dietary routine, so why not? I also continue to drink green tea, take a daily probiotic and have recently added fish oil to my regimen. I eat fairly well, but the idea of restricting things like gluten is just too overwhelming for me, so I find adding good nutrients has been a good way to go for me.

Now that I've been living with this for a year, I'm a bit more adjusted to FFA and I don't feel as devastated as I did in those early months. I have been pretty open about my disease with family and friends, but I don't discuss it much with them anymore. They just can't relate. Thankfully, the ladies here in this wonderful group can!

Comment by ElleMN, USA on February 2, 2015 at 10:36am

Dragon&Fox, I'm sorry to read your story but you have found a great support system here to help you get through this.

To Lo: I'm too camera shy to drop a picture of myself here but here is a picture of the general idea. The long pixie that I have is similar in that it combs forward (we joked about how this is like a comb-over for my FFA :) from the side and the bangs swope over my forehead. I'm really liking how easy it is to maintain. And I'm not focused on my forehead so much.MJ, I have the same scaling but little to no itching or redness; but the presence of the scaling is how they know the FFA is still active. After forgoing steroid shots for 18 months I started getting them again in Nov 2014 and have noticed little hairs growing at the hairline. As far as the scarred forehead skin, my dermatologist has recommended trying to build the collagen there to plump it up but RetinA is too harsh for me. I know there are other weaker drugs but I haven't tried them yet. I am planning on it though.

Comment by Maddy, California, U.S. on February 2, 2015 at 12:39am

Hi Dragon & Fox, Wow. I can really relate to a lot of what you said. I too experienced my greatest stress and grief (the illness and loss of my mother and best friend) a few months before my FFA really kicked in. I am so sorry that you are going through such grief. It is a sad and lonely place. I am glad you posted and are here. I went through months of the steroid injections, and yes, OUCH, they are horribly painful. One time my derm did about 20 and my head was bleeding after she was done. I think they are worth a shot. I did them for 6 months and really did not notice any difference (but I am not discouraging you because I know some people on here say they work!). I found, for me, that the liquid that I put on 2-3 times per week worked just as well, so I stopped the shots. My eyelashes also started thinning horribly and then my brows a year or so later. I do not know if it's related to FFA, but it seemed to be a precursor for me and the onset of my FFA. I started using Latisse (bimatoprost ophthalmic solution) almost immediately and my eyelashes grew back and most of my brows. I still use it every night. I get a prescription from my derm and buy through Canada since it is so expensive here in the U.S. I also understand feeling demoralized. I went through feeling very sorry for myself and a horrible depression about it all. I guess what I can say is that it does eventually get better. Anyway, I wish you all the best. I hope the acupuncture helps...and again, I am so sorry for your loss. 

Comment by Lynn on February 2, 2015 at 12:10am

So sorry to hear about your nephew. That is incredibly sad to lose someone close to you at such a young age. So sorry for your loss.

Your recent FFA diagnosis, although, not the end of the world like you said, really does suck. I get it completely. There are many other things that are far worse, and I too have told myself this many many times. The injections do hurt, I agree. I told my dr at my last appointment while she was doing the injections, that she was making me curl my toes! She tries to hurry through them, but it's just terribly painful. I find that if she does the left side of my scalp, and then gives me a 5-10 second break to let me catch my breath before moving on to the right side, that it seems to help a little bit. 

I think losing your eyelashes is pretty normal with this condition. There are products that your dermatologist can prescribe for you to apply to your eyelashes and eyebrows, that may help with the loss. I have used products on both my eyelashes and brows, and haven't experienced too much loss in either of these areas. I have no hair on my arms any longer and very little on my legs. It just seems so weird to me.

I still have very intense itching with this condition. My scalp itches almost constantly, and I have pretty severe itching all over really. It can be maddening. Some days are better than others, so I just try to take it one day at a time. 

All the best to you. Hope you find comfort in this site, as I have in knowing that you aren't going through this alone.

Comment by Lo on February 1, 2015 at 1:05pm

Hi Ellen. Would you mind sharing a pic of the haircut? Thinking about something similar. Need some inspiration.

Comment by MJ on February 1, 2015 at 12:28pm

Questions: I am one of those who fortunately has no rash or itching symptoms but the doctors can easily see what they call "scaling." It looks like white flakes. I thought it was from the drying effect of all the topicals but was told it was characteristic of FFA. Does anyone else experience this and is it only present when the FFA is active or is it always there? Also,I have been puzzled as to why the receding area takes on that white rubbery look with a magnified mirror when the disease is deep in the follicle. I wouldn't mind as much if receding scalp looked "normal" as many people naturally have higher hairlines. Does anyone have any idea if the scalp eventually normalizes?
MJ

Comment by MJ on February 1, 2015 at 12:09pm

Ellen,
Thanks for the haircut suggestion. I was just texting with my hair stylist about finding a new style. I was enrolled to participate in the Duke study in Oct at my last appointment but I have yet to fill out the survey. I feel bad about it but I just hAve not had the time to try to go through my old med history.

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